I’m going to say this now so that I’m not a party pooper on her actual birthday: it really doesn’t feel like it should be so close.  And not just in the usual “time flies” way, though that’s always true.  I just have such a disconnect between Ellie, the little person in my life, and the day that this baby was born. Obviously I remember it very clearly. But the ten weeks that followed were so surreal, my memory of March and April of 2011 will always be warped.  She didn’t even come home until May. So to think of celebrating in the middle of winter is kind of strange. Plus, developmentally-speaking, she’s not doing the kinds of things that other nearly-one-year-olds are doing. I don’t feel like I have an almost-toddler on my hands, the way I would otherwise expect of an 11-month-old.

THAT SAID…

The upside of being told in the hospital that your baby could potentially have very significant developmental delays and perhaps permanent deficits? Every time she makes a new leap forward, every time she does something sort-of-normal, it’s cause for celebration. (Remember that line from Say Anything…? “Start out depressed and then everything is a pleasant surprise.”)  When we were still in the hospital, and they suggested that there may be gross motor issues of TOTALLY UNKNOWN severity, I silently wondered things like, “maybe we should move to a one-story house in case she never walks and needs to be in a wheelchair.” Had I voiced that thought, I can tell you the doctors would have just looked at me and shrugged. They had no way of knowing which way it would go, either.

But my girl? My girl wants to be on the move.

Sitting up and rolling over are old news, she’s a total pro. While she can’t yet get herself up to a sit, she can go from sitting down to her belly with increasing speed, purpose, and grace. While on her belly, she now uses her arms to pivot around, and sometimes ends up pushing herself backwards until her legs are stuck under the couch.  Between the pivots and the rolling, I can no longer assume she’s going to be right where I left her. That photo up there? I put her down on the quilt in the foreground, sitting up. She managed to get herself over to the TV somehow.  It ain’t fast, but she moves.

In physical therapy, we’re working hard on getting more strength in her legs, hips, shoulders, and arms in the hopes of getting her to crawl. With as good as she is at sitting, we need to have her on her belly more so that she can learn to crawl before she learns to just scoot around on her butt. The physical therapists swear up and down that, once babies learn to do a seated scoot, it’s nearly impossible to teach them to crawl. So we spend time on her belly and try to scoop those knees up underneath her instead of being splayed like a little froggie.

But coolest of all, in the last week I can see her try to pick those little hips up on her own. Her stamina is improving almost every day, getting stronger and steadier in those hips and shoulders, kicking those legs, bouncing that little body.

I don’t know how long it will take, but my girl is going to crawl.

How awesome is that?

My big, awesome, 11-month-old girl. My munchkin, my pumpkin pie. What a joy you are. Happy almost-birthday.

We started trying pureed baby food when she was about six months old.  It was… not well liked. From time to time she would sorta kinda tolerate it, but one false move and we’d have a two-minute gagging fest.  To give you a sense of what I mean when I say “trying,” I mean I would just dip the tip of my pinky finger into the baby food, so that it was barely damp with applesauce. Then I would try to put my sort-of-damp-with-pureed-apples finger near her mouth, maybe touch her lip, maybe touch the inside of her lip.  Sometimes she’d allow it, sometimes she wouldn’t. And sometimes it would graze her tongue in the wrong way and she’d gag, hard, and that would be the end of that.  And when I say “gag,” I mean she’d probably be puking if there weren’t surgical procedures preventing her from doing so.

So, yes. Trying to stay on top of feeding therapy is HUGELY demoralizing. As necessary as it is, I found myself loathe to do it.  A month or two ago, our therapist suggested we try a teething biscuit. The theory being that it’s a food item, but it’s hard and not likely to come loose in her mouth, so it allows her to kind of experiment with it.  That actually went alright – she’d poke it with her tongue, sometimes bite down on it. Except, once it got damp from the tongue-poking, and those darn teeth would scrape off the tiniest crumb that can barely be seen by the naked eye? Gag time, once again.

Still, things have been improving. She still experiments with the teething biscuit, and she’s been putting a lot of her toys into her mouth, so that helps quite a bit to do some oral desensitization.  But those purees, ugh. I’d try them every now and then, but the gagging was just heartbreaking. I hated it as much as she did.

But we’ve got a feeding team appointment coming up, our first in a couple of months. Ever the last-minute homework kid, I decided I needed to at least be able to say we really tried the puree thing. So I tried again tonight.

She leaned in, opened her mouth, and poked my finger with her tongue.

And then she did it again.

And again.

A drop at a time from my finger, she kept letting me give her more. I didn’t have to trick her or sneak it in, I just held out my finger near her mouth. It got on her tongue, no problem. Inside of her cheek, no problem.  No drooling, no spitting it back out, and not a single gag. Not even a face, other than a furrowed brow in concentration.

Over the course of dinner, I’d have to guess she got a grand total of, what, maybe 1/4 teaspoon?  But damn, that was 1/4 teaspoon more than she has EVER taken, in five months of feeding therapy. And she did it willingly. Happily, even.

I am grateful for small miracles like this one. Very grateful.

Well, after one of those requests and a realization that video game time was again getting out of hand, we reinstated the star chart. They can earn a star for all variety of things – making their beds, clearing the table, putting away laundry. I even have the generic “help mom” on there as a way to reward otherwise unspecified good deeds.  But after 24 hours, my favorite star-earner is “read a book.”

At almost 4.5, both kids can read pretty well.  Daniel, honestly, is ridiculous. He can read it all. All of the words. ALL OF THEM. And he has so much committed to memory as “sight words,” his speed is downright alarming.  Rebecca is still sounding a lot of things out, but is getting faster and smoother by the day (she’s also more likely to “cheat” and just guess by looking at the picture on the page). Regardless, I want to encourage both of them to keep practicing their reading at home.

So I tossed “read a book” on the star chart.  Well, being the first day and starting from zero, both kids were desperate to earn more stars.  So when we ran out of laundry to put away and the dog had been fed, I suggested that Daniel read a book to Ellie.  Over the course of the afternoon, Daniel read three books to Ellie, and Rebecca read two.

When they each asked to read a second book in order to earn a second star, I hesitated. Were they just gaming the system?  Then I realized I DON’T CARE IF THEY ARE.  It takes 10 stars to earn 45-60 minutes of video game time. Read your baby sister ten books in exchange for some time on the Wii? GO FOR IT.

This is a win for everyone.  The kids earn a reward while practicing reading (nearly any book they want, though I draw the line at the super short ones that they have completely memorized).  Ellie gets extra attention from her big brother and sister, and gets read more books than I find myself able to do in a given day (oh, am I a slacker second-time-mom on that front).  And I get eager, happy kids and anywhere from five to fifteen minutes of peace, interrupted only by the occasional request for help on a tricky word.

WIN.

It got to the point that going to the appointments was almost embarrassing. “I swear, she really does roll over at home. She does… you know… touch things from time to time instead of weirdly recoiling her hand when you try to give her something.”

We had really been spoiled. For the first four or five months of PT, there was noticeable improvement virtually every single week. Either she’d be doing something altogether new, or would be steadier and stronger at a previous skill.  Halloween came along, and Ellie decided it was time to take a little break.

She wasn’t going backwards, exactly. In reality, it was clearly just a plateau. Normal. To be expected, even, after making so much progress. But with a baby who is already delayed, it’s frustrating when you stop seeing progress you’ve gotten used to. It’s hard not to get anxious over it.

Thankfully, in the last week, Ellie seems to be picking up the developmental pace once again.  Sitting up even steadier than before, and finally starting to use her hands to grab a toy or stuffed animal, instead of just using them to prop herself upright. In fact, not only will she pick up the rings from the floor in front of her, but she’ll transfer them to the other hand, AND put them in her mouth! Fine motor, cognition, and oral de-sensitizing, all in one easy toy!

The fine motor stuff was starting to worry me, but I’m happy to say there’s been a noticeable improvement recently. Lots more grabbing and reaching, and suddenly in love with one of those four-key piano toys from my mother-in-law. She was even kind enough to show off for both the physical therapist AND the early intervention therapist this week. Everyone is thrilled to have her back with the program.

Even the feeding therapy stuff has been going a little better. She likes to explore those teething biscuit cookies, and lets me poke around her mouth with this textured brush we use to try to tone down her gag reflex.  They’re small steps, but good ones for us.

Though I knew on a logical level that a plateau in her progress was totally normal and shouldn’t be worrisome, waiting for new skills to show up was really stressful and had me feeling quite discouraged. On an average day, I am only just holding the worry at bay, so it doesn’t take much to push me over the edge.  Seeing her master new tricks again? Suddenly all feels right in the world.

As you can imagine, that has meant a day or so of spectacularly awful diapers. By this morning, all doubt was gone that she clearly had something going on. As we drove to preschool this morning, I mentally debated which of our many doctors to call. I’d call the pediatrician, but our primary one is on maternity leave and I don’t feel like explaining Ellie’s background to another doctor. Maybe I should call the GI doctor? Or the Complex Care coordinating pediatrician from the hospital? Oooh, maybe the nutritionist…

And then I stopped myself. Hello, Liz. This is not your first time at the rodeo. You know exactly what they’re going to say. Any doctor you call will say this:

Oh, yeah. Virus. Bummer. Keep her hydrated.

And so we made our way to Target, and I made the executive, unilateral decision to put her on Pedialyte for 24 hours. I did not call or in any way consult a single one of the 9 care providers on her “team.”

This shouldn’t be so revolutionary. A second-time mom knows that she doesn’t need to call the doctor in the middle of the night for every warm forehead or unfortunate puke. You get some pedialyte, some ibuprofen, and an extra tub of Triple Paste for the horrific diaper rash, and then you wait for that virus to run its course.

But with a highly-medical-ized child, even seven months post-hospital, it’s easy to feel like you’re a passenger instead of the driver.  With Ellie, she still sees a minimum of two therapists every week, and many other specialties check in anywhere from once a year to once a month. Anything related to food intake is especially loaded. We’re working very closely with a nutritionist to make sure we walk the line between making sure she has adequate nutrients and protein and hydration to keep her body chugging along and give it enough to grow, while not giving her too many calories for her very-short frame. It’s all calculated at every visit, and then programmed into her feeding pump.  It’s math, no consideration for demand or hunger or self-regulation, because there is none.  So you can see why I get a little gun-shy when I think about doing something totally different.

But Ellie has never been sickly or fragile. She has never been immuno-compromised. She most certainly is not underweight.  She is a nine-month-old with a stomach bug, and I rather doubt the formula that I methodically pump into her stomach is making her feel any better right now. She will be just fine, and well-hydrated, with a day of Pedialyte while this thing works its way through her system. Yes, I’ll keep an eye on her and will make the call if anything seems unusually concerning. But I don’t need a team of physicians to tell me how to take care of an infant with a virus.

Oh, right. I’m in charge, here.

Anyways, my sweet girl is now nine whole months old. Three-quarters of the way to her first birthday. We’ve just had her nine-month pediatrician visit and her semi-annual Early Intervention evaluation, so I’ve got a pretty good picture of where she stands.

As for the vitals, she’s about 17lb12oz, and 25.5″. That remains a perfectly average weight and a WAY BELOW AVERAGE length. Short and squishy, that’s my girl.  Lucky thing got four shots this morning. It was supposed to be three, but the ancient pediatrician accidentally gave her HepA instead of HepB, so she got them both. When is my regular pediatrician coming back from maternity leave, again?!

EI re-evaluates kids every six months to make sure they still qualify for services (the child has to show at least a 30% delay in one or more areas to qualify). Ellie qualifies automatically based on feeding alone.  They scored her at “0 months / newborn” in the area of “self care,” which is entirely feeding at this age.  Frankly, they’d probably give her a negative score if they could. She eats nothing. She wants to eat nothing. She gags on everything. The feeding specialist we see through the hospital is visibly disappointed by her total lack of progress, and has proclaimed Ellie a “tough nut to crack.”

Feeding therapy sucks. I literally dab my pinky finger in the smallest amount of baby food you could imagine, and try to get Ellie to let me put it near her mouth, on her lips, or even just barely inside her mouth. Sometimes it’s borderline acceptable. And then sometimes it touches her tongue the wrong way and we have a two-minute gagging fit. It is so, so demoralizing.  But we have to keep trying to walk the very fine tightrope of gently pushing her to try to get her used it it and to tame the gag reflex, while not going too far or too fast and creating/strengthening an aversion that will set us back several more months. It’s awful. I hate it. Period.

Gross motor skills scored at 5 months. On the one hand, Ellie’s sitting is getting very good. She’s rolling back and forth quite a bit, especially at naptime. She has even (after the evaluation, of course) started to get herself from sitting, down to her belly, then rolled over onto her back. It’s not terribly graceful and usually involves a slow faceplant, but it does seem to be quite intentional.  She still lacks a lot of strength in her arms, and puts very little weight on her legs. Much work yet to be done here.

Fine motor skills were even lower at 3 months. That might be a little low, in my opinion, but regardless, she still needs a lot of work. One problem we’re having is that she is not terribly motivated by toys, so trying to entice her to grab something is very hard. Her own toes? No problem. Your face? For sure. Bright shiny baby toy? Meh.  She is a lot more likely to grab things and play with them if she’s reclined or supported while sitting. When she’s sitting on her own, it seems like she’s using all of her energy to keep upright, nothing left for those little fingers.

Cognition was placed at 7 months, and the evaluator even wondered if it would have been higher if her fine motor skills were better. Some of the things they look for the baby to do to demonstrate understanding involves using their hands to manipulate objects. So it’s not necessarily that Ellie didn’t understand something, but potentially that she just didn’t have the fine motor skills to act on it. Regardless, I’m very happy that she falls with a fairly normal range on this one.

Receptive and expressive language were at 5 and 7 months.  She makes a lot of different sounds, consonants and pitch and range and all of that, which is excellent. She doesn’t consistently respond to her own name, though.

And finally, social and emotional development. Clearly, she is Daniel’s sister – they scored her at 10 months.  I couldn’t tell you exactly what it is she does that makes her a social overachiever, but she is most definitely an interactive baby. She loves to smile at people, loves to have company, loves to be entertained.

Feeding crap aside, I am really happy with all of this. I am especially thrilled that, at least for now, her cognition, language, and social skills are reasonably within the normal range. Every delay has its challenges, for sure. But the fact that she is so sociable, the fact that she seems to be making strides toward communication… well, that makes the rest of it downright bearable if you ask me.  Motor skills I can work with. We can practice, we can strengthen, we can adapt. That spark in the eyes? That seems harder to cultivate, harder to compensate for.

Maybe I’m way off base, I have no idea. All I know is what I’ve got, and I am so glad that my girl has plenty of spark.

Today is a bit better. The sun is out, I got a nap yesterday.  And then I caught the strangest, most delightful baby laugh EVER on video.

You’re welcome.

The kids are back in a big Wii phase, and finally the two of them are really playing together much of the time (usually Rebecca prefers to watch and give Daniel “helpful” feedback). The game of choice is Mario Party, which is about the weirdest, trippiest thing you’ve ever seen. But they’ve figured it out and they love it.  I put Lego Star Wars on their Amazon Wish List in the hopes of getting the annoying Mario Party sound effects out of my head.

Ellie says, “whatever, y’all. I got my toes.”  She has literally no interest in any other toy. She just wants to hang out and grab her toes. Whatever makes you happy, my dear.

Tonight it was very nearby at a friend’s house, so I thought I’d take the night out. But truthfully, I have mixed feelings about going to these meetings now.  I mean, I certainly don’t go for parenting advice among the 4-year-old set. Not only are there very few of us with “older” kids, but it’s just not as much of an advice-asking kind of age the way those first weeks and months with twin newborns were.  And while I do have an infant of my own…  what, like I’m going to ask Ellie-related questions? For one thing, it’s a single baby, and she’s not my first. So all of the basic infant stuff, I have a relatively decent handle on, or at least I’ve heard all of the advice before. And, believe it or not, there aren’t exactly any other parents of g-tube babies in attendance.

Honestly, part of the reason I went is to pretend like I’ve got my shit together. I mean, I mostly do, more or less. I guess. We’re all alive and clothed and fed, right? But I’ve had a rough couple of days (weeks? months?), and am feeling like I barely have my head above water. Some of Ellie’s delays and issues are, while certainly no worse than before, getting under my skin and stressing me out a lot right now.  I don’t feel like I’m doing a great job, and the uphill struggle just seems so long and slow and absolutely no relief in sight.  But chit-chatting with nice, curious, nervous women who are pregnant with their first babies? Easy peasy. Makes me feel like the wizened old expert.  I can momentarily escape the uncertainty and anxiety that are specific to Ellie for a few hours.

And while that does make me feel mildly guilty, that need to escape my sweet, snuggly little girl, I’m trying not to beat myself up over it. It’s been a rough year, and it’s not like she’s going to hit some magic age and everything will be resolved and better and “normal.”  It is what it is, and that’s alright. But I need a break every now and then.

So thanks, people at N’s house, for letting me yammer on about having two babies and things related and unrelated. Whether you know it or not, you were a bit of my therapy tonight. I needed it.

I have long thought that 8-12 months is the absolute golden age of babyhood. They’re all these perfect little Gerber babies, adorable and smiling like they should be in a commercial or something.  I secretly wondered whether or not Ellie would be the same way for me, since she hasn’t exactly hit all of the typical 8-month milestones that seem to add to the joy of this age.

Um, yeah. Not a problem.

Oh, she is just the smooshiest, most squeezable, most delicious baby ever.  Sure, she’s a few months behind in the motor skills department, but clearly that isn’t the defining factor in golden-age-dom.  Holy hell is she cute.  Best of all, she’s very social.  She watches, she interacts, she grins, she laughs.

And while she is obviously attached to all of the members of her family, there is a very special place in her world for her big brother. She absolutely, positively adores him and everything he does. No one can make her laugh as easily as he can.  He’s nuts for her, too. While I’m constantly on his case to BACK OFF and TONE IT DOWN because he can be a bit too… enthusiastic in showing his affection.  Still, she loves almost every second of it.

I don’t even know what else to say.

I mean, have you EVER?

She is such a MUNCH.  All day long, I just nibble on those cheeks and call her my munchkin. My sweet munch.